Friday, March 30, 2007

Advice to Pediatric Endocrinologists: Grow Up - Part 2

As some of my readers may recall, last year, I had a posting called "Advice to Pediatric Endocrinologists: Grow Up" in which I noted that many endocrinologists who specialize in treating type 1 diabetes limit their practices to pediatric patients, as if the children they treat never grow up. I happened to stumble upon an article that was published in February 2007 that validated many of my initial reactions and wanted to share it.

What I found most interesting was the fact that some pediatric endocrinologists from Johns Hopkins in Baltimore are developing a transitional care program meant to address these very issues. Although the program has yet to become widespread in the U.S., it does serve as an important reminder that the needs of adults with type 1 diabetes are unique yet under-served, but perhaps if the program is successful, it will appear elsewhere in the future. One can certainly hope!

Leaving the nest with Type 1 diabetes
by Kristin Vorce, The Examiner
Feb 1, 2007

BALTIMORE - Each year more than 13,000 children in the United States are diagnosed with Type 1 diabetes, according to the Juvenile Diabetes Research Foundation. That is 35 children per day whose parents will likely monitor every aspect of their care and treatment until they leave home.

When these children become adults, they are suddenly on their own, said Dr. Greg Clark, an endocrinologist at Johns Hopkins. Complicating things, most adult diabetes cases are Type II, which is sometimes called adult onset diabetes.

"There aren't many adult endocrinologists who specialize in Type 1 diabetes," he said. "After they've left their pediatrician most [Type 1 diabetics] end up with a doctor who doesn't understand the disease at all."

This is why Clark is launching a new transitional care program teaching young adults to treat Type 1 independently.

A person with Type 1 has an immune system that destroys cells making insulin, a hormone critical to processing sugar in the blood, Clark said.

Clark, diagnosed with Type 1 at age 11, knows what it is like to take insulin injections and test his blood sugar by pricking his finger for blood four to six times daily. "It's a very difficult disease to treat because it requires so much on the part of the patient," he said.

Clark establishes relationships with patients with Type 1 in the pediatric clinic at Johns Hopkins before they transfer to his adult practice, he said.

The University of Maryland Medical Center has a similar transitional program. Young adults learn to keep in touch with their endocrinologist without nurturing parents calling the shots, said Debra Counts, director of pediatric endocrinology.

"In the pediatric model it's 'our disease,' " Counts said. "In the adult model it's 'my disease.'"

When patients with Type 1 move into college dormitories, they need to bring much more than a refrigerator and television. They should pack two blood glucose meters with extra batteries. They should also give to their resident assistant a glucagon kit in case they have severe low blood sugar, according to The Juvenile Diabetes Research Foundation.

Morgan Gilsan, a 20-year-old who attends Villa Julie College, said she sometimes thinks people do not know there are two types of diabetes.

"It just seems like they're forgetting how difficult it is for people with Type 1 diabetes and how we need help," Gilsan said.

She has learned to handle the daily routines on her own, and her three roommates know what to do if her blood sugar gets too low. Gilsan said she feels comfortable with Clark because he has Type 1.

"I went to a couple of other doctors and they were either too strict or too lenient," she said. "They didn't really understand the disease very well."

Although there are medications available to combat Type 1, they have serious side effects. Clark is currently working on stem cell research to find a safe cure.

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Amber-Bams said...

Hi Scott,
I just started my own blog and found yours. I really like your blog! I read your blog from November 28th where you suggested starting a letter campaign to the ADA to clarify the difference between T1 and T2 diabetes. You said to comment your blog if interested. I wanted to let you know I think this is a fantastic idea and I am interested in helpping. Please feel free to visit my blog and email me with how this effort is going!!


Scott S said...

Thanks Amber, and welcome to the Diabetes OC (online community)! haven't done much on that effort, in part, because I am addressing some issues with the NYC Dept. of Health's involuntary hemoglobin A1c registry, which has consumed a great deal of time. I still like the idea of renaming the conditions, and there was a recent letter written to the New England Journal of Medicine on doing so as well. Perhaps when time permits, I can then pursue new challenges!

BetterCell said...

The Naomi Berri Diabetes Center has a problem in treating Adults w/T1DM, especially so when they have a mandate to treat both pediatrics and adults.

Scott K. Johnson said...

I'm *still* trying to recover from the difficult task of having to leave my pediatric endo - heck, I grew up with the guy!

I've yet to find someone as caring and helpful as he was.

BetterCell said...

I agree with your feeling abt. finding/having a good Physician regardless of his title. They are difficult to come by these days regardless of what city/state/county a person lives in.
I have only come by 3-4 Physicians and a CDE since I was six who I felt truly understood and cared about me as a Person and Patient with T1DM.
The reason why I remember them after so many years is because they are worthy of rememberance and respect, since they truly encompass what a Physician/Doctor/CDE should be. Not a Buisnessman!!